I went for my annual review with Mr Mundil yesterday. He was accompanied by a “budding neurosurgeon” (his words not mine) Ahmed.
We talked about how things have been since we last met. I explained that it’s been quite mixed, with the pain shifting down from my right should blade. In a previous post I’d said I thought it was more to the side. However, after pinpointing it yesterday, I realise it is pretty much directly below the inside of my right shoulder blade where it had typically been concentrated. We discussed the two programs I have on the device. (I’m ignoring the original, non-closed-loop one that wasn’t removed.) I don’t necessarily find much difference. Occasional over-stimulation when I get up in the morning if I’ve left it on my day setting, but little else.
My right foot
No, this isn’t a Daniel Day-Lewis sequel, but rather the source of most of my recent torment. I told Mr. Mundil that I often feel like I just want my toes chopped off. He kindly refrained from calling me an idiot 😊 and instead gave me a sympathetic nod. I explained that I’ve recently started trying socks designed for diabetic patients. They’re made from a looser fabric (there must be a term for that!) and are seamless. This has helped reduce the irritation caused by the seams in regular socks around my toes. While these socks are somewhat better, I’d still prefer to be barefoot all the time—not ideal as colder weather approaches. We discussed my earlier review this year with Dr. Hyde, the pain consultant, and the ongoing unavailability of capsaicin treatment. Mr. Mundil mentioned that they’re still trying to get approval to start Qutenza treatment, but the hospital hasn’t made a decision yet. If they do approve it, he will definitely put me forward for the treatment.
We then discussed the possibility of using the SCS to target my foot. He still believes it will be challenging to reach the foot with the paddle positioned so high in my neck, but it’s worth having Nima give it a try. He plans to arrange a follow-up appointment with me and Nima within the next month or so to experiment with different settings on the existing stimulator. If it seems promising, Mr. Mundil suspects it will require a different program. This may mean I’ll need to go several weeks without back stimulation to assess how effective the device can be on my foot alone. This will help determine whether an alternating program could adequately address both areas. If not, he will need to consider whether implanting a second stimulator for my foot is feasible. He noted the main challenge will be finding a placement for the two generators that prevents interference between them.
Lastly, we discussed continuing the use of lidocaine patches. Since most of the neuropathic pain has been concentrated around my toes in recent months, I have stopped cutting the patches to apply to different parts of my foot. Instead, I now place half a patch—my prescribed dose—across the top of my foot, just behind the toes. This approach not only targets the most painful area more effectively but also helps the patch stay in place better. Mr. Mundil mentioned that the hospital is trying to reduce repeat prescriptions, but since lidocaine is not available through primary care, he is happy to continue prescribing it.
Physio progress
Following the appointment with Jess a couple of weeks ago, I’ve felt somewhat more confident with keeping up my exercises. There are occasional mornings when I need to leave it a while before doing my neck and torso exercises, but I generally do them as I’m getting out of bed. I tend to do the tandem stands a bit later in the day. I’m definitely feeling a little more planted standing with my right (stronger) leg behind taking most of the weight. My foot still twitches like crazy to keep my balance, but I rarely rely on my fingers on the worktop to keep balance. The other way round – left foot taking the strain – is a different matter. I wobble like mad, and often have to put a finger or even a whole hand on the worktop to stop from falling. I can’t say I’m seeing any improvement, but I’ll keep going. I have another appointment with Jess next week.